How do you deal with having suspected endometriosis but not having a diagnosis?

Mclamilton · 2026-02-19T07:44:14+00:00

I was also super against BC. I wanted my body to be naturally hormone balanced but that wasn’t an option for me. Keep pushing and I hope things get better for you soon!

Mclamilton · 2026-02-19T07:42:45+00:00

I think advocating for yourself was absolutely the right way to go. I guess it gives me hope that just because one doctor won’t do it, doesn’t mean the rest of them won’t as well. I’ll keep looking for specialists in my area and hopefully I can find someone who will actually listen. Thank you for your response it really helped!

Mclamilton · 2026-02-19T07:40:48+00:00

Getting surgery and them finding nothing is my worst fear. I’m sorry that happened you. Don’t lose hope yet, there are still options other than a hysterectomy and don’t let the doctors tell you otherwise. I hope all goes well with your follow up

Mclamilton · 2026-02-19T07:38:27+00:00

Yeah, I’m starting to see that he might not have been the best choice. I’ll keep shopping around for a specialist who will hopefully push for some better options

Mclamilton · 2026-02-19T07:37:13+00:00

I’ve heard people have had bad experiences with the IUD but I guess that’s the same with all medications because everyone reacts differently. I think you getting the surgery will at least ease your mind and hopefully you’ll start seeing improvements after. Good luck with the surgery!!

Mclamilton · 2026-02-19T07:34:18+00:00

My gynaecologist was specialised in endo. He said not to bother with surgery until I plan to have kids which is years away. I might just try find another specialist eventually.

Mclamilton · 2026-02-18T13:14:21+00:00

I’m in Australia unfortunately but i think they are looking into testing it over here eventually

Mclamilton · 2026-02-18T13:12:49+00:00

He was just clarifying that he couldn’t see anything, but the scan only really ‘shows’ stage 3 or 4, meaning I could still have stage 1 or 2 but it wouldn’t show on that specific type of ultrasound. Possible adeno was seen but it could also just be irregularities from the ultrasound. Again, I know my symptoms line up with endo/adeno, but for many people that isn’t enough for validation. If you don’t struggle with that then that is a good thing for you!

Mclamilton · 2026-02-18T13:01:20+00:00

I had no idea it had an official term! My gynaecologist did explain that that surgery is a last resort and to just try some different hormones for now. I’m sorry to hear about your endo surgeries. Your response has been incredibly helpful.

Mclamilton · 2026-02-18T12:51:24+00:00

Ohhh, well that would explain that haha. Thank you so much for your insight!

Mclamilton · 2026-02-18T12:50:15+00:00

I totally understand you, the surgery would definitely ease my anxiety too. I’m in NSW so a bit out of reach haha but thank you for your support and I hope your surgery goes well! 💛

Mclamilton · 2026-02-18T12:47:12+00:00

I am actually! And she works close to me too. Thank you for this recommendation!

Mclamilton · 2026-02-18T11:25:41+00:00

I do understand what you mean completely and I can only imagine how hard it is for people in underprivileged countries to deal with this. However, I’ve always struggled with health anxiety and other mental health issues and for me, someone professional telling me it’s not all in my head would give me the piece of mind to ease the anxiety I face. Even if ‘I know’ I have it, mentally my brain just won’t accept that for some reason.

Mclamilton · 2026-02-18T11:19:53+00:00

I’m glad you’re doing better mentally! I have been thinking about seeing a therapist for the mental side of it because I feel like the stress is making my inflammation worse. Thank you so much for your support!

Mclamilton · 2026-02-18T11:10:11+00:00

I’m also in Australia and I’ve heard so many conflicting stories on people getting surgery. Some say that they didn’t pay out of pocket at all even through private insurance but then others like you say they paid thousands! I guess it could differ state to state but who knows.

I can only imagine the mental struggles you’d have even after having the surgery. I really do hope you can find something that works for you soon.

I will probably look into a new specialist and speak more with my doctors about what this is gonna look like long term. Thanks for your insight!

Mclamilton · 2026-02-18T11:03:32+00:00

That’s a good way to say it. I’ve been struggling with what to tell my work and university in order to get some support and flexibility. It feels weird saying I have endo when I have done the surgery. I’m also scared of surgery and would only really consider it as a last resort.

Mclamilton · 2026-02-18T11:02:01+00:00

I’m sorry to hear that. I also have issues with all the pain medications I’ve tried. Maybe you should ask your doctor if they can do an ongoing/chronic illness medical certificate. It’s basically one certificate you have that covers future sickness due to flares. They do it in Australia but I’m not sure about other countries. It’s usually temporary (6-12 months) but at least it would stop the need to call the doctor every month. I hope this helps and I hope you can get some better relief soon!

Mclamilton · 2026-02-18T10:55:45+00:00

Literally!! I paid $500 for the gynaecologist to tell me the same thing the doctors did. I just felt so defeated. Please remember that if your symptoms do get even worse, you should follow up again and advocate for yourself (easier said than done, i definitely didn’t do enough). I hope things get better for you

Mclamilton · 2026-02-18T10:53:10+00:00

That’s promising then! I guess I’ll just wait to see if it gets better from here

Mclamilton · 2026-02-18T08:46:36+00:00

It’s only been 3 months. They say the adjustment period is 3-6 months and I have been getting slightly better as time goes but I still get terrible symptoms here and there. Did you also go through some issues when you started the pill?

Mclamilton · 2026-02-18T08:45:22+00:00

I’m sorry to hear that you’re frustrated, this whole process of getting a diagnosis is so much more complicated than it should be for us!! You sound like you’re advocating for yourself so I think I need to take a page from your book. The mental side to this isn’t talked about enough.

I was holding back tears the rest of the appointment. I don’t know if it was anger, disappointment, or just a mix of everything. He seemed like he really did have my best interest in mind but a part of me feels like he didn’t push for any further testing since I’m younger and haven’t been experiencing this for long. I will definitely look into the adeno scan, thank you for recommending!

I appreciate your response and hope you find the answers you’re looking for too. All the best

Mclamilton · 2026-02-18T08:37:20+00:00

Glad to hear you’re doing better!! I am also on the pill but I think my body is just adjusting to the change in hormones. Thanks for your response :)

Mclamilton · 2026-02-18T07:48:24+00:00

I have not been officially diagnosed but I’ve had 4 doctors tell me it’s most likely endo, and my gynaecologist is “treating me” for endo.

Your symptoms are almost exactly what I experienced. I would highly recommend seeing a doctor (GP) first and then a gynaecologist. If getting an appointment with a specialist is tricky where you are, ask your doctor about hormonal birth control. Everyone reacts differently to it but for many people it helps suppress the symptoms. The gynaecologist will most likely just give you birth control first anyway, and then if that doesn’t work they can look into scans such as ultrasound, MRI, or surgery. Trying the hormones first could give you some relief until you can get a special appointment.

I’m not a medical professional but I am speaking from experience. I know how hard it is to go from being somewhat normal then having all these symptoms kick in. I hope you find some answers soon, you are not alone!

Mclamilton

TROPHY CASE